Die Wise (Stephen Jenkinson)
OVERVIEW
“Die Wise” by Stephen Jenkinson topped the Richter scale for me. Jenkinson’s ability to find the fault lines in our cultural narratives about death was astonishing. Just about every mainstream truism we tout about dying, Jenkinson argues the opposite. Hope isn’t necessary or beneficial, dying is something we do rather than something that happens to us… it’s possible to die without dying. Well suited to spark conversation and controversy, this book has plenty to chew on. In addition, this was the first book that made me feel like it’s okay to die. Like really, truly, properly okay. And while it’s hard to achieve or maintain that sentiment in our North American culture, it can be done and it’s worth doing.
I went back and forth on how to summarize this book in a succinct way that still rounded out all the reflections to full effect. I couldn’t do it (sorry about that). Here’s the fleshy version.
How did we become so death-phobic?
There were(/are) times and places where dying was not a fearful thing. It might always have been a heartbreaking, sorrowful, complicated thing, but not a fearful thing. So which cultures experience this unnecessary death phobia? Jenkinson thinks it’s those that 1) are addicted to competence and need-gratification, and 2) experience a unique and modern version of home-lessness/ancestor-lessness.
You can argue about why our culture is so competence-addicted, so glorifies independence, but you can’t deny that’s how we are. For us, life is a need-gratifying thing. We assess the value of our lives by how in control we are. It logically follows then why our culture so fears the struggle, chaos, dependence, and indignity that dying visits on us. Life is habit-forming, and we live our lives by the canon of try, overcome, achieve, succeed. From this lens, death is a failure and dying a terrifying thing in its ability to strip every able-ness valued by our culture. Jenkinson doesn’t think dying is traumatic, he thinks dying in a death-phobic culture is traumatic. Consider the DNRs and advanced directives we put in place… these don’t say we think there’s a good way to die, only that there is a spectrum of bad ways to die. There’s no good way to die in a culture that’s exclusive in its assignment of value to autonomy and vitality. What meaning or purpose could death have in a place like that?
The second ingredient to death anxiety is our homeless-ness. For those of us who make up the predominant demographic (and culture) in North America, we don’t live in our ancestral homeland. Our ancestors fled in search of a new world, an empty book for their newer, better story (never mind that it wasn’t really empty). While it may not be intuitive to us, to Jenkinson it’s obvious that death anxiety is a form of home-lessness and ancestor-lessness. If you live and die where your ancestors lived and died, stretching back hundreds or thousands of years, you feel like you belong to the land and the people. The bones and bodies of your dead nourish the earth around you – they become the trees, the food, the water, the animals, the air. We can see the purpose of death, not metaphorically but tangibly. There is a deep, unbroken sense of kinship with your home and your dead, and there is a place for the dead among the living.
But without this connection, this tethering of living to dying… to die is to disappear. It’s why we often spend our dying time in a frenetic bid to be remembered – creating letters, videos, (blogs), other legacy projects – because remembrance is a personal project, not a cultural expectation. It’s why the poison practice of embalming, which prevents our death from having any life-giving meaning, goes unquestioned. There is no purpose to death in our culture, not even to create new life (which you could argue is the fundamental purpose and imperative of death). To die is to no longer belong to anything. Death is a meaningless, forgetting spectre. And to Jenkinson, this is the twin core of our death anxiety.
Coupled together, it’s no surprise that dying people struggle to find a meaning in their dying, and why so many people fear experiencing a thing that our culture assigns negative value.
The outcome of death phobia – dying not dying
Do you know you’ll die someday? Many researchers, psychologists, and philosophers think you don’t know, not really. You might say that’s ridiculous, everyone knows they will die. If that is true – if we really live our lives with the deep-seated knowledge that death is inevitable – why is a terminal diagnosis “bad news?” We get it’s bad because in our culture dying is bad, but why is it news? What is novel about discovering you’re mortal? Unless of course death is not a given. Unless of course the certainty and inevitability of our death isn’t really a known thing.
It’s possible not to die. When Jenkinson first introduced that idea, it sounded like nonsense. Well of course we all die… how is it possible to die while never actually dying? In our North American culture, we treat death as a strictly metabolic event, and we synonymize life with lifespan. In this way, sure, death is inevitable. But what of dying? What of knowing you’re dying, planning for your dying, accepting you’re dying, living your dying? Well, that’s completely voluntary.
If you view dying as a metabolic, biological event, dying is something that happens to you. But that’s not true – dying is something you do. “To die” is not a passive verb, it’s not something that can happen to you (not even grammatically). And if dying is something you do, it’s something you can elect not to do. Either because you’re afraid, you refuse, or you don’t know how. And so, while it’s true that our bodies die, we, the conscious project of us, spend most of our time refusing to know we’re dying. Refusing to accept we’ll die, refusing to stop treatment for the hope of more time not dying (while actually dying), refusing death or its inevitability in general.
Consider that to admit someone is dying is a grave betrayal – is breaking an unspoken rule. What secret are we trying to keep if death is an expected part of life? Consider how bizarre it is that when a dying person says “I’m going to die,” we treat that as hopelessness that needs managing rather than a true statement of what is happening. We rally and motivate and try to revive their desire to live. “Don’t give up,” we say. We have advanced pain and symptom management, but the psychological process of dying is something we deny until we can’t (and sometimes not even then). The awareness of our own dying is so unspeakable, so feared a thing in our culture, that we avoid it at all costs. With all our advanced med-tech and death phobia, we put off dying until the suffering is so overt and so unbearable that we say, “enough already.”
In our culture, where death is never a credible, meaningful, or acceptable outcome, we opt in favour of not dying. We ask people to die the hard way, which is not to die at all.
WHAT NOW? (actions for mortal atheists)
So we greet each day with an expectation to live, believing that living is proper, natural, right, and that our living is self-directed. We don’t really believe we’re mortal, and we certainly don’t act that way. We subscribe to the cultural narrative that autonomy is king, frailty is inadmissible, and death is meaningless and should be avoided at all costs. And the cost we pay is high.
What do we do about it?
Cultivate a genuine gratitude for life
We wake up each day “with the just and sanctified certainty that [our] life is a right to be exercised,” that it’s a “fair trade meritocratic consequence of being careful and living right.” Of course, that’s make-believe. Waking up each day is a gift. We could instead wake up wanting to live, but knowing how unlikely life is, that life is not an entitlement, a certainty, or something we’re ever at liberty to claim. We could live the knowledge of our mortality in a way that’s impactful and that manifests our living differently. Life is not a reward for playing by the rules. Death is the only rule. And so, Jenkinson invites us to instead wake up with “wonder, awe, and a feeling of being on the receiving end for now of something mysteriously good.” Wake up and live with gratitude.
Lose control
Learning to live in the knowledge that life is an out-of-control-thing is a repeat customer on this blog. In its current state, dying well (which is usually synonymous with maintaining “quality of life”) is measured by “how successful [we are] at resisting the diminishments that come with dying.” We base our worthiness on our self-reliance, independence, competence, and autonomy. Maintaining “quality of life” looks a lot like maintaining our ability to work, to go to the bathroom unassisted, to get dressed. And so, our need to be in control bleeds into our dying. Dying, in part, is a trauma because we make losing control a trauma. But letting things be as they are is a skill we can learn now. Our lives give us plenty of time to practice before dying starts. Jenkinson observes, “if the raft of your dignity is bound together by the frayed rope of things going on as you believe they should, what of this kind of dignity is there left to conserve as the raft of your life plans begins to take on water?”
Dying should change everything
Jenkinson dislikes the phrase “end-of-life,” because by his estimate what most people mean when they say “end-of-life” is “end-of-meaning-in-life.” In our culture, there’s no purpose or meaning to dying, and so we trade it in for dying-pretending-not-to-be-dying. But we could, instead, let our lives be utterly changed by it. For Jenkinson, life should never be the same after the news of our death. In the face of such a singular event, why opt to try and retain normality? Why should the standard of how “well” we’re dying be measured against the yardstick of “business as usual? of “as little disruption as possible?” There are other options available, including the option to live your dying as the extraordinary, heartbreaking, literal once-in-a-lifetime activity that it is. Just a thought.
Give meaning back to death
If we can take away anything from “Die Wise,” it’s that death must have a meaningful place in the story of life. When it doesn’t, there are consequences. Researchers, psychologists, and philosophers are in consensus: for humans to feel their lives have meaning, they need to see themselves as part of something bigger than themselves, and they need to see that narrative endorsed by their culture. If this applies to living, it applies to dying. We must start re-writing the story of death. It probably includes that we owe our lives to a trillion former deaths, and that when the time comes, we have to give our atoms back – and if that’s a necessity, if death must reclaim its function as a life-giving thing, we need to think long and hard about how we dispose of our dead. The story definitely includes that death is normal, and natural, and right, and just. It probably includes a larger re-working of our entitlement and our vast consumption as a species.
Carry your dead with you
We have to start carrying our dead with us. We, as a village-minded people, have to make space for them in our lives. Our dead need a presence among the living. I have a sneaking suspicion I’ll get a glimpse of how better to do this once I read Caitlin’s Doughty’s “From Here to Eternity,” but for now, consider this a placeholder. Jenkinson says: “dying people must stop dying trying to be remembered and begin to die remembering.” By that I think he means that if we truly carried our dead with us, dying people wouldn’t be singularly burdened with the task of their own legacy-making. And if dying could be a natural thing (maybe even a super okay thing?), death could be less fraught and less fearful. Still sorrowful and heartbreaking, but not abnormal or terrifying. We could die remembering all the deaths that preceded our own, and they could serve as a wise guide for our own dying. In turn, our deaths and the manner of our deaths could be a legacy that we pass on.
I loved this final sentiment from Jenkinson: we love to see flowers bloom, but even flowers are working their way towards death. The flower gives itself away to death in the act of being itself. If you only see the bloom, how much of the flower do you actually see?
IN SUM:
Is this book entirely secular? No.
If you had to describe the book in one sentence? Everything that we believe about death, dying, palliative care, dignity, euthanasia, etc. Stephen Jenkinson believes the opposite and he’s here to turn the screw.
Who should read this book? Definitely everyone working in death care… and probably anyone who has started a blog about dying and wants to blow their brain open.